JCPSLP Vol 14 No 2 2012

Complex communication needs

The experiences of intimacy by adults with acquired communication disorders

who use AAC Angela Leigh, Dean Sutherland, and Tami Howe

Augmentative and alternative communication (AAC) provides the mechanism for interpersonal communication for adults and children with complex communication needs. Research into AAC-use among adults with acquired communication disorders has typically focused on device selection, developing functional communication, acceptance and use of AAC, and caregiver support. The aim of this qualitative study was to explore the experience of intimacy and intimate communi­ cation from the perspective of individuals (and their partners) who have an acquired communication disorder and use AAC. Seven key themes emerged from the data, namely effort, importance, time, closeness, adaptation, emotion, and identity . Within these key themes participants discussed how AAC has been both beneficial and detrimental to their intimacy and intimate communication. I ntimacy has been described as a primary psychological need (Lippert & Prager, 2001) and according to some researchers, human beings require repeated, positive interactions with the people they are in caring relationships with in order to lead fulfilling lives (Miller & Perlman, 2009). Moss and Schwebel (1993) conducted a review of published definitions of intimacy and proposed the following definition: “Intimacy in enduring relationships is determined by the level of commitment and positive affective, cognitive, and physical closeness one experiences with a partner in a reciprocal (although not necessarily symmetrical) relationship” (p. 33). The quality of intimacy within personal relationships influences our overall health and well-being, reinforcing the importance of maintaining intimate personal connections (Miller & Perlman, 2009; Prager, 1995). Kouneski and Olson (2004) suggest communication as being vital in the development and evolution of intimacy. These researchers state that how a couple communicates is a crucial factor in intimacy, and communication needs to be assertive and respectful in order to promote intimacy. For the purpose of this study a broad definition of intimacy was used which combined Moss and Schwebel’s (1993) affective, cognitive, and physical aspects with the communication component described by Kouneski and Olson (2004).

Although communication is central to intimacy, little research has investigated how intimacy is affected when people experience communication difficulties. Several studies have looked at intimacy and disability, with results indicating that strong intimate bonds and emotional connections between spouses lead to better quality of life outcomes and less stressful experiences for caregivers (Baikie, 2002; Wright, 1998). Communication between spouses or intimate partners is likely to be irreversibly altered after the onset of a neurological disease or disorder, a stroke, or traumatic head injury. For example, the ability to communicate using natural speech may be significantly reduced or lost and alternative methods of communication may be required in order to provide adequate levels of communication (Beukelman & Mirenda, 2005). Strong interpersonal connections are important in the maintenance of intimate relationships when one partner acquires a disease or disability. Spousal acceptance and validation is vital for improving feelings of closeness and intimacy (Manne et al., 2004). However, little is known about the impact on perceptions of intimacy for adults with acquired communication disorders, particularly considering the central importance of communication to interpersonal relationships. While partner-responsiveness is critical, self-disclosure is also crucial to the interpersonal process model of intimacy (Manne et al., 2004). The ability to self- disclose is likely to be severely diminished as the result of an acquired communication disorder. To date, research looking at adults with acquired communication disorders who are using AAC has focused on device selection, providing functional communication, acceptance and use of AAC, and caregiver support (Beukelman, Fager, Ball, & Dietz, 2007; Johnson et al., 2008). There is a lack of research that describes how AAC impacts the intimacy of relationships of adults with acquired communication disorders. There is a clear need to develop our understanding of intimacy and intimate communication for adults using AAC and their partners. This information will provide valuable insight into the needs of adults who use AAC and the strengths and weaknesses of existing AAC systems. Therefore the aim of this study was to explore the experience of intimacy and intimate communication from the perspectives of adults with acquired communication disorders who use AAC and their partners. 1 Method A qualitative research approach based on phenomenology was chosen for this study to allow for an in-depth exploration of the lived experience of peoples’ intimacy in relation to AAC and acquired communication disorders from the insider’s perspective (Patton, 2002).

Keywords AAC ADULTS ACQUIRED COMMUNICATION

DISORDER INTIMACY

This article has been peer- reviewed

Angela Leigh (top), Dean Sutherland (centre), and Tami Howe

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JCPSLP Volume 14, Number 2 2012

Journal of Clinical Practice in Speech-Language Pathology